Skip to Accessibility Tools Skip to Content Skip to Footer
A person resting with their chin on their hands looking sad.

You’re Not Dying and You Don’t Have Cancer. Why Are You So Sad?

Those of us on the MacularDegeneration.net team were recently given a wonderful opportunity to travel for a conference. Our keynote speaker was a woman who recently lost a pregnancy, lost her father, and lost her husband all within a few months. She spoke to us about grief. Her name is Nora McInerny and boy did she give me some validation for the feelings I often have about my life with macular degeneration.

Grief and macular degeneration

You may be wondering why patient advocates for diseases like macular degeneration would need to hear a presentation on grief. I think, generally, when thinking of grief many people automatically think of the grief that accompanies death. This makes total sense because what a deep and everlasting grief that is. There isn’t much worse than that type of loss and grief.

Loss comes in many forms

Plus, we can all empathize with death as a form of loss because we all have (or will) experience it in our lifetime. Nora even boldly stated in her presentation the reminder that, “Everyone we love has a one hundred percent chance of dying.” We don’t all experience the same illnesses or hardships other than death, so death is something we can all recognize as a form of loss and grief. But, grief is not just the loss of a loved one.

Symptoms of grief

That anger we felt when first diagnosed? The confusion about what to do? That sadness and loneliness that accompanied finding out just how bad our eyes were? The very, very deep sense of loss that hangs over our heads still… even years after diagnosis? Having a difficult time finding joy when there’s so much ‘other stuff’ to be joyful about?

These are all symptoms of grief, Friends. These feelings are more than normal, and they are more than okay.

People don’t (usually) mean to hurt each other

I don’t know about you, but I’ve had my feelings hurt pretty badly by people that I love… simply for the fact that they just don’t understand the physical and mental struggles that accompany macular degeneration. It is often an invisible disease after all.

“At least it’s not cancer…”

Trust me, I have avoided many macular degeneration conversations at all costs because… well, they’ve hurt my feelings. I have had life-long friends say things to me like, “It could be worse, you aren’t dying.” Or, “Why are you so sad, you seem like you can still see?” I’ve even had one, very shocking, “It’s better than something like cancer.”

It’s hard for others to understand

Over the years I’ve learned how to kind-of keep my feelings in check when this occurs because honestly, how can I expect someone who isn’t experiencing what I’m experiencing to understand it?

Sigh.

Most of us aren’t dying… well, not right now… we’re aging, but we aren’t dying. So, then what are we grieving?

Grieving life before macular degeneration

We’re grieving the lives we thought we’d have before macular degeneration. We, as humans, try to control everything about our lives, don’t we? We (think) we have everything all planned out. But the truth is, we don’t. Life is predictably unpredictable. If we can count on anything in life, it’s that life will change. Things never stay the same… good times, bad times, okay times… they will all change.

Something I’ve learned along my health journey is that we all have, have had, or will have something going on that is difficult. If you’re lucky, it’s only one or two somethings at a time. If it isn’t macular degeneration, it’s bound to be something else.

“Stuff” – we all have it

Another of our speakers at this conference referred to this as “stuff”. We do all have “stuff” going on. “Stuff” that’s difficult for ourselves, “stuff” that’s difficult while caring for others, even “stuff” that we worry about that may never happen.

Grief touches us all

The bad news? None of us is exempt from grief. Thankfully, over time, things start to get easier. Nora’s central message was not that we move on FROM grief or ‘fix it’, but that we move forward WITH it.

There are five stages of grief, the last stage being acceptance. I feel like, twelve years after my diagnosis, I’ve finally accepted my macular degeneration. But, that doesn’t mean I’ve stopped grieving it.

Making lemonade

How we go about moving forward with our grief is up to each of us individually. For me, personally, I do a few things daily that I’ve found helpful. I give myself permission to feel what I’m feeling and I intentionally try to seek joy in everything I do. This helps me take care of my emotional health. I focus on living a healthy lifestyle through diet and exercise, helping me take care of my physical health. And, I research and give knowledge to others in an attempt to make lemonade out of some really sour lemons.

Moving forward with the grief of macular degeneration

Some days are bound to be harder than others. That’s life. But, I promise you, it’s possible to live a joyful and normal life while grieving through illness.

Change is inevitable. Growth and joy are optional. Here’s to learning how to move forward WITH grief.

Find the joy through the grief,
Andrea Junge

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • us52609662
    4 weeks ago

    Keep the articles coming. They are the best.

  • shelby-comito moderator
    4 weeks ago

    I’m so glad to hear you find Andrea’s articles to be so helpful @us52609662! We take our community members’ feedback to heart and really appreciate you taking the time to share your thoughts with us! – Shelby, MacularDegeneration.net Team Member

  • Christine Joy moderator
    4 weeks ago

    Wow !I love how transparent you were in this article. I truly echo some of those same feelings. So #grateful that I had the opportunity to experience the conference with you and reflect and discuss grief and STUFF. You’re truly a powerhouse. At this point when people say mean things to me my default is often humor …for me that takes the edge off a little.

  • Andrea Junge moderator author
    4 weeks ago

    Thanks for your support, @ceejaybee! I will be calling you this weekend to catch up after the kids are in bed! Grief and STUFF is so HARD…humor definitely helps! -Andrea, MacularDegeneration.net Team Member

  • us52609662
    4 weeks ago

    I totally agree with the grief process.
    I try everyday to accept my situation with as much dignity as I can, I feel I handle it very well on the whole.
    My mother and aunts have all suffered from macular degeneration , in way their having MG has been a blessing for me, my children, husband and grand children are so aware of how the disease will progress and have so much concern and kindness to me. They know what my limitations will be and are ready to jump in for certain situations.
    Regarding the comment at least you don’t have cancer, well I have had cancer twice and I can honestly say my macular degeneration diagnosis was harder to accept and the reason being there is so much hope and cures for cancer. I have been blessed.
    So everyday I get up and thank God for a another day of sight, I volunteer at my elementary school and hit a mean golf ball. So rise and shine, have your bad days, sit in the bathroom and have a good cry and then get up and straighten your crown and LIVE. I am 76yrs young.

  • Andrea Junge moderator author
    4 weeks ago

    Thank you for taking the time to read my article and comment, @us52609662! It sounds like you have a wonderful support system…one that did not come at a small price for your family. You are truly an inspiration to us all, beating cancer TWICE, having macular degeneration, AND being so positive! I know that statistically, people are in fact more frightened of becoming blind than they are of death, but I also don’t think one really understands this until it happens to them. I think your second to last sentence is now my life goal! Rise and shine, have your bad days, sit in the bathroom and have a good cry and then GET UP and straighten your crown…and LIVE. Thank you so much for this! Wishing you well, friend. -Andrea, MacularDegeneration.net Team Member

  • Poll